I had an interesting conversation with a parent yesterday. She was asking me about individualized funding and support provided by agencies. Our discussion went something like this....
"I heard that if your child gets 24 hour support through an agency, they take all of their ODSP and you don't get any more Special Services At Home (SSAH)...is that true?" she asked.
I replied by saying, "The reason you don't get anymore SSAH is because that funding is only provided to families whose son or daughter lives at home." "As for taking their ODSP...no agency takes someone's funding, but rather use any kind of funding that the person has for day to day living expenses, which may include ODSP."
"Oh." "Well what about this individualized funding... why do I have to apply for that?" "Why isn't the funding just available?" asked mom.
"You have to apply because the government isn't giving any new funding to agencies...the shift is to provide funding directly to people, so that you can purchase the supports your son or daughter wants or needs" I responded.
"Okay, but I've heard that it may be many many years before my son would get any individualized funding...right?" she asked. "Right." I replied and further explained, "and even when he does get funding, chances are, it's not going to be enough to fulfill all of his support needs." "Then you would be using his individualized funding, SSAH and probably his ODSP to try to drum up enough funding for support."
"Oh, I see." she said.
"It's suggested that your son become connected in his community so that he can have more natural supports and not rely so much on paid support." I continued.
"Ya right" she said, "I can't even get family to make a commitment and everyone's life is busy. I need to know that support is in place for my son so that as I age, it's one less worry for me. And it would be nice if I had some relief now."
"But let's get back to this funding thing" we both said. "Why is there a waiting list? Why do our sons and daughters not get funding automatically?" she asked. "I'm not sure", I said, "to me, it's inhumane and the government continues to take advantage of the good will of families."
"Yes, I agree." she replied. "People should have a choice and there needs to be way more funding provided...to agencies and to families who want it directly."
"I know, it's just not right."
"So do you see?" I asked, "that it's not the agency's fault, it's the government." "There is not enough value placed on our kids and on the people who support them." "If there's a myth that agencies take up too much funding because of bureaucracy and high wages...guess what?" "The majority of their budgets go to pay for direct support and would you work for less than $18 an hour?"
"No way" she replied.
"There must be way more value placed on developmental services, on our children and on the people who support them." I stated.
"No kidding" she said.
"So do you see?" I asked again, "it's not the agency's fault, it the government."
"Absolutely" she said. "I get it now."
"Okay, so what do we do about it?" "How can we get the government to listen?"
"Ha ha ha!" I chuckled. "I'm tired just thinking about it. Let's get through the Holidays and we'll talk in the new year!
Wednesday, December 15, 2010
Monday, December 13, 2010
Parents want a life too!
Some of my most recent conversations with parents have been about the desire to have a life of their own. They say to me, "I love my child and I definitely want what's best for them, but I want a chance to have some freedom in my life too."
The parents further explain that it's not easy to live every minute of your life based on what is going on with your child. There are sleepless nights, constant worry, never-ending planning and no end in sight. "We certainly understand our parenting responsibility,", they explain, "but day after day, month after month, and year after year, it gets pretty exhausting."
The stress and anxiety increases as parents get older while their energy level and ability to cope seems to decrease. Parents who don't have children with a disability get to relax and retire in their senior years. On the contrary, parents that have a child who has a disability, don't. The responsibility and demands of their life stay the same and often become greater as their child ages too.
"What do we do?" they ask. "I don't want to write a plan," one parent states. "I have a plan, I want to relax." "I want to retire in another country". "I want a relationship with someone." "I want to travel." "I've worked so hard for many years, I want to have some time for me." "Who is going to help me get my life back?"
They agree that their son or daughter should be in control of their life, to make decisions about what they want and not to have anyone stop them from achieving their goals and dreams. They need help from someone other than themselves to make it happen.
In addition, there is nowhere for their son or daughter to live outside of the family home. "It's not right" they say, "to have him live with us for much longer." "What happens when we get sick or when we die?" How fair is it that our son won't know anyone but us?"
Parents have told me that when they express to others that they want a life of their own, they feel judged and looked down upon. They say that people expect them to continue at the same pace up until the day they die.
"That's just not fair" say the parents. "Why is it so wrong to have what everyone else has?" "What's wrong with wanting the chance to have a life too?"
The parents further explain that it's not easy to live every minute of your life based on what is going on with your child. There are sleepless nights, constant worry, never-ending planning and no end in sight. "We certainly understand our parenting responsibility,", they explain, "but day after day, month after month, and year after year, it gets pretty exhausting."
The stress and anxiety increases as parents get older while their energy level and ability to cope seems to decrease. Parents who don't have children with a disability get to relax and retire in their senior years. On the contrary, parents that have a child who has a disability, don't. The responsibility and demands of their life stay the same and often become greater as their child ages too.
"What do we do?" they ask. "I don't want to write a plan," one parent states. "I have a plan, I want to relax." "I want to retire in another country". "I want a relationship with someone." "I want to travel." "I've worked so hard for many years, I want to have some time for me." "Who is going to help me get my life back?"
They agree that their son or daughter should be in control of their life, to make decisions about what they want and not to have anyone stop them from achieving their goals and dreams. They need help from someone other than themselves to make it happen.
In addition, there is nowhere for their son or daughter to live outside of the family home. "It's not right" they say, "to have him live with us for much longer." "What happens when we get sick or when we die?" How fair is it that our son won't know anyone but us?"
Parents have told me that when they express to others that they want a life of their own, they feel judged and looked down upon. They say that people expect them to continue at the same pace up until the day they die.
"That's just not fair" say the parents. "Why is it so wrong to have what everyone else has?" "What's wrong with wanting the chance to have a life too?"
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